Hemoglobin worse after 4 week on Venetoclex - CLL Support

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Hemoglobin worse after 4 week on Venetoclex

profrich profile image
13 Replies

After 4 weeks on venetoclex, my ALC is less than 2000, which in itself is good. However, hemoglobin and platelets are worse than they were 2 1/2 weeks ago (although better than when I started). I also seem to have less energy than 2 1/2 weeks ago.

Has anyone else experienced this? If so, when did then they get better?

Thanks,

Rich

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profrich
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13 Replies
cllady01 profile image
cllady01Former Volunteer

If you check the list of common side effects for Venetoclax, you will find that hgb and platelet levels do decrease on Venetoclax. Hopefully you are making your treatment Dr./team aware of any side effects, there are many more side effects listed.

venclextahcp.com/cll/safety...

Patc890USA profile image
Patc890USA

Hi, I've been on Venetoclax for about 10 weeks with some ups and downs because of my neutrophil counts. My hemoglobin and platelets have been up and down also but now seems to be edging up. My WBC, ALC & ANC are all normal now. So hang in there and I sure they will improve soon.

Pat.

profrich profile image
profrich in reply to Patc890USA

Thanks much for the information.

profrich profile image
profrich in reply to Patc890USA

Are you still taking 400 mg? I got back Friday's results, which include just one day on 400 mg. My alc is 1.47 which is almost too low. I wonder if 400 mg is too strong.

Patc890USA profile image
Patc890USA in reply to profrich

I went up and down with my dosage. Stopped a few time because ANC was very low(0.05). My ramp up took about 8 weeks instead of 5. I've been on 400mg for about 3 weeks now and counts are almost back to normal. Only hemoglobin and platelets still a bit low.

profrich profile image
profrich in reply to Patc890USA

What is your alc now?

Patc890USA profile image
Patc890USA in reply to profrich

1.4

profrich profile image
profrich in reply to Patc890USA

That is about like my 1.47. Seems low to me. I will ask my hematologist about it Wed. How about your hemogobin now?

Patc890USA profile image
Patc890USA in reply to profrich

My doctor list a range of 1.2-3.4 and NIH lists 1.32-3.57. So yes my count is on the lower end but it was much lower and is steadily moving up. My hemoglobin was around 10 for a long time and is now 12.5

profrich profile image
profrich in reply to Patc890USA

12.5 is pretty good. Mine was up to 12 but was down to 11 on Friday. I would be happy to get to 12.5.

Thanks,

Rich

bkoffman profile image
bkoffmanCLL CURE Hero

Venetoclax may suppress bone marrow function. That is usually more than balanced by the good job it does cleaning out the marrow of CLL so there is more room for the healthy normal cells to grow, leading to a rebound in the counts after several weeks. Stay strong. We are all in the is together. Brian CLLSociety.org

Justasheet1 profile image
Justasheet1 in reply to bkoffman

Doc,

I love to see you comment here and there on the forum. I know how busy you are and it’s wonderful when you have time to weigh in.

Thanks,

Jeff

bkoffman profile image
bkoffmanCLL CURE Hero in reply to Justasheet1

Thanks. Time is a jet plane. I have so little and it moves so fast.

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